Strawberry Festival 2011!

We had a girls day out this last Saturday. My mom, sister and I took Kaitlyn and Gabby to the Strawberry Festival in Plant City! It was Gabby's first time, Kaitlyn's second. They both had a blast! We went later than we did a couple years ago, and therefore avoided most of the traffic, but the festival itself was still packed. It was definitely a huge differnce for Kaitlyn as the last time she was there was before her diagnosis and she ended the festival in so much pain she had to be carried to the car by a friends brother who was with us. This year she left on her own to feet with a smile from ear to ear!!!  Next year we are planning to go again, but this time we will get an all day pass for the rides....

Kaitlyn about to go on her favorite ride the Ring of Fire

Kaitlyn with her new friend also named Kaitlyn

So excited after winning her "moo-moo"

Kaitlyn won Gabby a ducky, and the lady gave Kate the bat for being such a good big sister!!!







Life's like a jump rope

C....F.... who would think those two little letters would have such a huge impact on our lives. Not me... I can not get over how fast our lives can do a "180". Those two little letters have totally rocked my world. Life has changed so much from them. I can not stop researching. I can't stop worrying, and I really really can't stop THINKING. It's all consuming... I wake up and I am worrying about breathing treatments getting finished on time, I worry if Kaitlyn is going to feel any worse or I am praying that she is feeling even a little bit better.I am thinking of ways to improve our fundraising, or planning on what to do next.... I know that we are still lucky. I see posts on facebook or in others blogs about loved ones passing on or they are just sliding down that slippery slope of poor health. I know that it could be worse, and I worry that it will be.... When I go to bed at night, I am worrying about Kaitlyn staying up so late to finish breathing treatments, or if she's gotten enough sleep because she has to get up in a few hours and do it all again. I worry about whether I really should pull her out of the public school system against her wishes,and despite the doctor saying its not necessary. I worry that maybe because I haven't yet, it's my fault she's now cultured positive for pseudomonas. As if the guilt for passing on the gene causing the CF wasn't bad enough. I really worry that she has been fighting infection for almost 2 whole months, and that she wakes up every morning to tell me that her throat is still hurting or hurting again, or hurting worse... I panic every time I see the school's number show up on my phone that it's going to be another call telling me that Kaitlyn is having more coughing fits, or coughing up more/worse mucus, or that her throat is hurting so bad I need to bring her something, or worse, one I haven't gotten yet... and that unknown is probably the worst. I pray daily for my daughter's health to improve, I pray daily for researchers and scientists to find a cure. I pray daily that maybe this has all been a horrible nightmare and that maybe if I pinch myself hard enough I may just wake up. I pray for all those that I read and hear about who have lost loved ones to this horrible disease, every single one of them touch my heart. I pray for those who are in the last stages of their battle, as well as those just beginning it, or anywhere in between. For awhile when Kate was still being tested (she had a total of 3 sweat tests) I prayed that each one of the test results were mistakes... that the next one would be good news. Then after diagnosis I was so devastated I quit praying for a little while. I read something, just an excerpt from a book written by a person who has since passed from CF.... his sister asked him if he was mad at God for giving him CF, and he responded, "God didn't give me CF, two bad genes gave me CF, God gives me the strength to fight it". It helped me realize that God didn't do this to my daughter, and it's okay to lean on him. I am trying so hard to give my burdens to him.. why am I failing so miserably?  My 11 year old daughter is handling this so much better than me. She always has a smile on her face and a song on her lips. Well... almost always... lately mornings have been particularly rough on her, and she is going through phases of fatigue throughout the day, but she still usually smiles through it... It's funny, you can have good days where you are revved up and full of fight....  and you can have bad days where it all seems so overwhelming.... it's like one of my (and Kaitlyn's) favorite songs from Blue October called Jump Rope.

 "I want to tell you that everything will be okay
That everything will eventually turn itself to gold
So keep pushing through it all
Don't follow, lead the way
Don't lose yourself or your hope
Cause life's like a jump rope

Up down
Up down
Up down
Up down yeah
Remember life's like a jump rope...."

Well... except I want to hear (not just say) that everything is going to be okay... but it sure is up, down, up, down, up, down...... 

Dear Lord.... these burdens are too heavy... I give them to you Lord.... please carry them for me. Thank you Lord. And Lord, if you could, please let me know that it will all be okay. - Amen

Take it easy...

So Kaitlyn went to karate tonight... first time in about 2 weeks. The girl just doesn't know how to take it easy. She used her inhaler before like she's supposed to... but she had to use it again before karate was over. I asked if she was okay, and she said she was fine, but I really should have stopped her then. I told her to take it easy (again), and just watched her a little more closely. Not even a few minutes later she was asking to bow out and pretty much gasping for breath... Not that I haven't heard her gasp for air before with exercise, but not like that... she was wheezy. I should be used to such things with all the trouble I had with my own asthma over the years, but as scary as it is when you can't breathe, it is infinitely scarier when it's your child and you feel helpless. I expected the inhaler to act instantly, even though I should know better, and when it didn't I panicked and called the doctor on call. I told him I gave her an extra 2 puffs on the inhaler as we were at least 15-20 minutes from home, but I was racing there to get her on the nebulizer. The doctor pretty much agreed with my plans and told me to call him if the nebulizer treatments didn't help. Well, by the time we got home the inhaler had helped and she wasn't as wheezy, but still short of breath. I told her to relax and do the nebulizer, and after all her breathing treatments, they did their magic and no E.R. visit was necessary. Thank GOD!   I also told her that if she doesn't start taking it easy, she may not be able to keep doing karate... she then broke into tears and said she didn't want to HAVE to take it easy... what do you say to that? All I could say was I wish she didn't have to either, and I wish I could make it better, but that's in God's hands.

For the most part, she is usually a very upbeat kid, she's got a great attitude, and she handles all these new struggles with such amazing grace for an 11 year old kid... I can completely understand her getting upset when she can't do something she absolutely loves... it just breaks my heart too. I really hope that once she beats this latest bug that she has an easier time with karate. She just tries so hard to keep up. And on that note, Sensei Paul and Sensei Soo and all the other black belts they have help instruct (some of which are RNs, which is nice to know in case it was any worse) are so understanding and so supportive of her it is amazing! She truly loves karate so much, as long as it is okay with her doctors, we will be keeping her in it even after she leaves the boys and girls club at the end of the school year.

Well anyways, all that albuterol made Kate jittery and she couldn't sleep, so we stayed up and added pics to her facebook profile... we went through a bunch of old photos and videos, and were laughing so much it's a miracle we didn't wake the rest of the house. It made for some great mommy-daughter time though :)  But I was noticing that as I looked at the pictures how I seemed to think of them as before and after diagnosis... it was really something to just look at them and see how much she has grown in just a few short months.... I don't know if it's just the few inches in height, or the few added pounds, or the growing up too much too fast that comes with something like this (it's a lot of responsibility to keep track of medicines, etc), but she seems to have grown up so much. I guess we mothers like to keep them little and protected forever, it's just so hard to not be able to do either.

It really sucks to feel so helpless. I have all this energy to fight, but at the same time....feel like I've somehow failed to keep her safe. I guess the only thing I really can do is put that energy into our Great Strides walk, so I guess tomorrow I will put together another email... I already updated my homepage today.... and on that note, I guess it already is tomorrow seeing as it's almost 2am... guess I should get some sleep... unfortunately for me, Kaitlyn scared me so much the adrenaline is keeping me from sleeping too.... MOMMY-DAUGHTER TIME BROUGHT TO YOU TONIGHT BY... INSOMNIA.....

(pic of my Warrier Princess from an impromptu stop at Sarasota beach last month)

the Good, the Bad and the Ugly

I know everyone has been asking me how Kaitlyn's doing, and I am sorry I didn't update yesterday, but it was a long day. She had her colonoscopy and endoscopy yesterday at All Children's hospital. It was our first time there, and let me just say wow. The hospital is huge, the kids there seemed to be having fun with all the kid friendly entertainment (such as game systems like Wii and X-Box as well as several toys and games that are hanging on the walls). Kaitlyn was a little nervous, but she did excellent. They didn't even give her numbing cream for her IV (they used Freezy spray?) but even then she did great! (Here is a pic of her right after they put in her IV.)

She had an endoscopy in another hospital just 7 months ago, and we had a much longer wait and it wasn't as comfortable... @ All Children's things went very smoothly.

Anyway, after her procedures, the doctor came out to talk to me, and the good news is he told me they didn't find anything else (such as crohn's disease, etc) THANK GOD!!! He said where she is having the issues is where they would expect a person with CF to have issues and he wants to "be aggressive" about it and so the bad news is he has upped her Miralax to 3x/day. Hopefully that will take care of it... but Kaitlyn hates the miralax, so it's still kinda bumming her out. When she came out of recovery, she was pretty dizzy and groggy, but she was happy it was over and done so quickly. She couldn't even hold her head up she was so dizzy, so she had to take a nap to sleep off the anesthesia.

After her procedure we let her choose where she wanted to go for lunch, and as she had planned all along, we went to a Chinese buffet restaurant. Fortunately for her, there was a Chuck E Cheese next door and after lunch we took her over so she could play some games. She had a blast, and she was nice enough to even spend a few of her tokens taking Gabriella on a ride or two.

They both had a blast, Kaitlyn really wanted to take Gabby on this one, but I had to draw the line...

anyway, Kaitlyn had a lot of fun, it was her first trip to Chuck E Cheese (they don't have one close by here), but we've promised anytime she has to go up to the hospital we'll stop by and let her play awhile...

And I would really love to end it here, on a good note, but unfortunately I can't. I received a call today from Kaitlyn's pulmonologist. She still has a cough, and tonight was going to be her last dose of her antibiotic, but it seems even though I was sure she was getting better, that she will have to do another round with a stronger antibiotic. Her culture came back positive for pseudomonas. Not the news I wanted to hear... so tonight she will start on a different antibiotic orally, and they are working on getting her TOBI (inhaled antibiotic) approved and sent to her ASAP, so she will probably start that one on Friday. I know that pseudomonas is not a good thing, but as this is the first time we are dealing with this, I am still doing a lot of research. The nurse who called me said thankfully it is non-mucoid which she explained means it hasn't colonized yet.... so that is better than if it had. Hopefully this round of antibiotics will kill it and we won't have to do the TOBI again for a while....

What I would really like is to see Kaitlyn catch a break. Lately she has been tired a lot, coughing a lot, and just plain sick of not feeling well. She was really excited about going back to school, and hopefully doing karate this week. I have to go down to the pulmonologist's tomorrow to pick up more neb cups for her, so hopefully they will still let her do karate Friday. I want to make her happy, but I also don't want her to overdo it and make herself worse.

I appreciate all of you keeping Kaitlyn in prayer. I let her know every time someone tells me they are praying for her so she is aware and thankful too. Every prayer helps! She is very aware of how many of you love her and THANK YOU for taking the time to tell her and show her. For those of you who have already donated to her GREAT STRIDES team Kaitlyn's Crusaders, THANK YOU!!!! For those of you who haven't donated yet, there is still time, our walk is APRIL 2nd. Please donate anything you can, even $1.00 is a $1.00 more they didn't have before. Everyone of you who donates can honestly say you're part of finding a cure for CF! Kaitlyn is a huge part of this walk, she is very involved, so she knows everyone who donates is truly showing their LOVE and SUPPORT!!!!! So once again THANK YOU, THANK YOU, THANK YOU <3 <3 <3